Balance

I haven't written in awhile. We've been having our ups and downs lately. Last week was frustrating and not particularly fruitful. Much to our and Paul's oncologists' consternation the hepatologist said it was a no-go on the drainage catheter. As the hepatology nurse practioner said "it's like a direct portal to infection" and would likely lead to a severe abdominal infection and possible death. So Paul will have repeated paracentesis performed either here or in Houston. Paul also had a paracentesis or 'tap' as they are called. The interventional radiologist pulled 4 liters of ascites fluid out of Paul's abdomen! That's after they pulled off almost 5 liters just two weeks before! So Paul's moving around, bending, and breathing much easier than before. I guess that is one fruitful product of last week.

Paul also had an EGD (in case you've never had one, it's a non-invasive procedure where a very thin camera is fed down the throat and used to visualize the esophagus, stomach and the upper intestine) last week. No new developments there though. His varices are slightly bigger but still don't pose a threat in terms of bleeding. The hepatologist decided to leave them alone for a little while longer. Again, we'll watch and wait for any signs that one has ruptured and Paul has internal bleeding. Paul also had a two day respite from his near-constant nausea. After the EGD Paul was having a really bad time despite the anti-nausea drugs he already had, so he was given a shot of Decadron. Like all steroids that drug is a miracle! Unfortunately the effects wear off pretty quickly. But those two days Paul had a much better appetite, more energy, no nausea and all-around seemed to be more himself. It was nice. Too bad long-term Decadron comes with too many downsides to use it more often.

Nausea is perhaps Paul's biggest obstacle to feeling good right now. It keeps him from eating when he wants to, keeps him from keeping down what he has managed to eat, and often interferes with his medicines. One medicine in particular - lactulose can actually trigger his nausea. It's thick, syrupy and far too sweet. We try to mask it in cranberry juice, but even that doesn't cut it. However, the lactulose is essential. It is used to treat and prevent hepatic encephalopathy due to compromised liver function; a dangerous accumulation of toxic substances in the blood, including ammonia, causing confusion, lethargy and eventually death. Paul has had some mild confusion, forgetfulness, and even difficulty writing. These are all signs of mild to moderate hepatic encephalopathy. Fortunately, encephalopathy can be treated by lactulose. It helps the body effectively rid itself of ammonia. Once the ammonia levels are lower, the signs of encephalopathy diminish. We battle this everyday - getting the right dose of lactulose that Paul can keep down while maintaining the delicate balance between not enough and too much.

Today Paul received more blood and magnesium too. Since Friday, Paul's gotten 3 infusions of magnesium. A common problem with cancer patients and liver patients is an inbalance of electrolytes, particularly magnesium. Paul has been especially hard hit with this lately. Magnesium is soooo important, and it's incredibly frustrating that Paul's levels won't stay up. The infusion is long - 2 to 3 hours depending on the dose. Paul has a hard time getting and keeping the giant horse pills of magnesium down, so this is our option for right now. Hopefully today's infusion will stick.

My greatest frustration is that we're in this kind of holding pattern where nothing really changes. It's a struggle when there's no clear end in sight. I also worry what's going to happen when I go back to school in a couple of weeks? I know my parents will help out however they can, but they have their own lives as well. Like so many things with these diseases, we have to find a way to strike the right balance.